Edie Mayhew and her partner Anne Tudor from Ballarat, Victoria in Australia gave a poignant presentation titled: Our Bitter-Sweet Journey with Younger Onset Dementia . It is an enlightening discussion on the highs and lows of living with dementia, and of their triumph as a couple on living the best life possible with Mr Dementia present in their home. Thank you both for allowing us to share it with DAI members here, and also to Dr Rahman for recording it and giving permission for us to share it here.
They have also kindly provided their speaker notes for us to publish.
OUR BITTER-SWEET JOURNEY WITH YOUNGER ONSET DEMENTIA
INTRODUCTION:
Hi I'm Edie, and this is my partner, Anne. I was diagnosed with Younger Onset Dementia, Alzheimer's Disease in September, 2010, aged 59. I worked happily as a teacher of the deaf for twenty years, teaching unhappily in a regular Primary School for two years, then for 5 years as a Massage Therapist. But after two hip replacements I found my true calling as a Driving Instructor loving, every minute of the twelve years I was able to do it. Being forced to retire was my greatest disappointment when diagnosed with Alzheimer's. It also put an end to being a blood donor. I almost made it to 100! I don't remember much about pre-diagnosis other than I kept going to the wrong house to pick up clients for their driving lessons. Anne will tell you about that period.
Pre-diagnosis:
In 2005, one of Edie's hip replacements dislocated and she was given pain relief before and after arriving at hospital. For three hours, Edie continually asked, “Where am I?” and “What am I doing here?”. It was the first time I'd seen her mind fail her and it frightened the hell out of me. My mother died from Alzheimer's a few months later. I became a research subject in an Alzheimer's study early in 2006, because of my mother's alzheimer's and almost imperceptible signs of change in Edie.
A pattern was emerging with Edie withdrawing to the study and spending hours at her computer. In time I came to realise she was playing computer games. She would no longer sit and relax with me and would only watch sports programs on TV. Edie was also reluctant to socialise, later revealing she couldn't follow group conversations and didn't want to repeat herself. If I tried to discuss these changes she would get defensive or angry. If I came into the study she'd shut down the computer. We had never had these issues before.
Edie wasn't able to express what was going on in her head; she was cut off from herself as well as me. She was increasingly disengaging, becoming more forgetful, easily frustrated, lethargic, defensive and obstreperous at night.
We'd make arrangements to meet for lunch but she wouldn't turn up and I wasn't getting messages about arrangements which had been made to catch up with friends. But the clincher that something was seriously amiss concerned a pizza delivery. Some Friday nights Edie ordered us a large capriocossa. One night, one small capriocossa arrived for both of us for dinner. “Why on earth would you order a small capriocossa?” I asked bewildered. “I'm not very hungry” was Edie's response. My world collapsed in that moment. I knew I had lost my Edie.
I was increasingly having to remember events and organise everything, including holidays. We went on safari to the Kruger National Park in 2007 and to Norway, Vienna, Prague & Croatia in 2008. Unlike all previous travel, Edie had no interest in being involved in any of the planning, although I knew she was very keen to travel. Twice at airports when we were separated Edie became very distressed. She stopped contacting friends and initiating outings. She was leaving for work earlier and earlier.
When we were putting this presentation together I mentioned to Edie that it was bringing back a lot of painful memories and she said “I didn't handle it very well”. She didn't, she shut me out and wouldn't share her concerns. But I didn't handle it very well either, I wasn't as patient as I wished I'd been, nor was I persistent enough in getting Edie to talk. We both withdrew as a way of managing the situation. It was a horrible time.
The Road to Diagnosis:
Anne says I was prone to falls and had several from 2007 onwards, badly injuring my shoulder a couple of times and grazing my shin very badly when I tried to stop my car from rolling down the driveway! One day I came back from a walk and told Anne I thought I'd fallen over and dislocated my finger. Next time we saw the doctor she confirmed the finger had been dislocated & I must have fixed it myself.
In mid 2008 we were travelling from Split to Dubrovnik by boat. We decided to top & tail it on the bottom bunk and put our bags on the top bunk. At some stage in the night, I climbed up and went to sleep. I must have needed to go to the toilet & forgot I'd shifted beds. This resulted in me falling with a great thud, hitting my head against the half opened metal bathroom door as I landed, and leaving me with two black eyes & a very sore head. Passengers looked at us suspiciously at breakfast next morning, which amused us greatly.
In December 2008 I had a knee replacement. While in hospital our bank rang and told Anne we were two months behind in credit card payments. We'd never had to pay interest before. When Anne checked my desk she found a mountain of unattended bills and business forms that had been there for months. I was summarily sacked as the Chancellor of the Exchequer.
In April, 2009 we travelled to the Sunshine Coast with Anne's sister & her husband and I tripped on a shrub, fell over and shattered my patella. Fortunately the knee replacement I'd had four months earlier wasn't damaged. The kneecap was wired and we went on our planned holiday to North Queensland. I was in a full leg brace & totally dependent for six weeks.
Anne persisted in trying to get me to see our GP. It took two years. When I came home she asked me what the doctor said and I told her she said there was nothing wrong. I think I must have forgotten why I went to see her. When we both went a couple of weeks later, our GP conducted the three object test and declared “Edie, your memory is shot”. I then had a neuropsychological assessment over six hours from May, 2009. Results indicated problems with new learning and memory, and mild attention and organisational difficulties. He suggested a review in twelve months.
I was referred to a geriatrician while still wearing the full leg brace. The geriatrician concluded I was depressed, which I was, and dismissed the neuropsychological report. An MRI scan indicated no abnormalities and we were told to get on with our lives and forget about memory problems!
Some months later I had a review with my Sleep Apnoea Specialist. Anne talked to him about her concerns and his response was that it was a bit like looking into the distance on the road: you see an oncoming vehicle but it's too far away to know what type of vehicle it is; when it gets closer you can determine if it's a bus, or a truck or a car. We knew this to be bad advice and that early detection and diagnosis was very important.
Anne had already decided prior to the neuropsychological review that she needed to either work at home or retire. She was concerned about safety issues so I came up with a master-plan to create a separate entrance, hallway and toilet at the rear of the house and convert the study into a practice room. It enabled Anne to continue to work for a further 3 ½ years in an environment which worked really well for everyone.
Diagnosis
We had the 12 month review mid 2010. The neuropsychologist kindly wanted to give us the feedback at home. Significant deterioration had occurred in the 12 months, particularly in new learning and memory. He indicated the likelihood of Alzheimer's.
We sat silently in the lounge room for a long time after he left, feeling appreciative for the calm, caring way we were informed, but numb. Eventually we stood up and held each other for a long time, and cried. The elephant in the room was the experience with my mother who had Alzheimer's for more than 20 years. We had moved from Melbourne 23 years earlier to assist my father in her care. We had been to this place before.
Edie obviously found the thought of me having to face this dreaded disease again unbearable and undoubtedly it was a significant factor in her shutting down for so long. However having a partner and a parent with dementia is a very different experience.
We sourced a specialist neuropsychiatrist in Younger Onset Dementia in Melbourne for a formal diagnosis. He has been a great support. Alzheimer's was confirmed in September, 2010 after a PET scan and a review of the earlier MRI. We knew now what we were dealing with and there was relief in that. It was more than five years since I first became concerned about changes in Edie.
The First Two Years Post Diagnosis:
Having to retire was a terrible blow. We had to sell my car and try to sell the business. There was a succession of new people passing through our lives, local, state and federal bureaucracy, financial institutions, lawyers and organisations and agencies which support people with Dementia. Anne felt overwhelmed at times with the amount of form filling she had to do – Centrelink to claim Disability Pension, Carer's Pension, Carer's Card, Companion Card, Taxi Directorate, ACAS forms, and a 30+ page application form for Respite in an Aged Care facility. Thankfully Younger Onset Key Workers assist newly diagnosed families through the process now. We are fortunate to have an excellent Key Worker in Ballarat.
Becoming actively involved in the world of dementia was a positive first step. A group of local people with Younger Onset Dementia and their partners participated in the three day Alzheimer's Australia “Living with Memory Loss” program. It was confronting and informative, powerfully bonding our group and helping to establish a small community of care and support. We now knew Alzheimer's Australia would be with us for the long haul. I joined Alzheimer's Australia Victoria Reference Group and Alzheimer's Australia National Advisory Committee.
Those with the diagnoses went on to participate in a planned day activity group at Eyres House, initially one day then two days a week. We were a close knit group, had use of a bus and engaged in many fun, activities. The program is currently going through a transitional phase as two members died late last year and dementia has progressed significantly for others; they have either been admitted to an aged care facility or are no longer able to participate in the YOD program. It has been difficult as I am the only original member left. The dedicated staff are committed to YOD and we're hoping that YOD members with advancing dementia will still be able to maintain some connection. Two new members have joined.
As part of planned activities at Eyres House in 2011, a specialist YOD art group was established at a Neighbourhood House, run by the Salvo's, one half day a week. Using different mediums we've created a number of pieces, individually and in groups. We've also produced personal photo booklets. I had no experience with Art before this and it has been a great activity, building confidence, enabling creative expression and giving an opportunity to produce something meaningful. Some of our work has been placed in the YOD Garden at Eyres House.
After I had my third hip revision in December, 2011 I went to a private hospital nearby for a week's rehabilitation. Although the hospital was aware of my dementia, and a profile Anne prepared had been placed at the front of my medical file, I was still discharged without any consultation with her.
During the first two years post diagnosis we had regular appointments with the neuropsychiatrist and a specialist Younger Onset Dementia Social Worker. In addition to support from Eyres House, we had a Local Council respite worker for 3 hours a fortnight and respite support from a community service provider who came four hours a week. Anne received support from Carer's Victoria and she attended monthly Alzheimer's Australia supported Carer's Group Meetings, formed after the Living With Memory Loss Program. I know Anne values the group highly. From the beginning we established six weekly appointments with our GP, then monthly appointments with a physiotherapist and weekly sessions of hydrotherapy. I also see a podiatrist every six weeks.
We completed major renovations to our home two years after diagnosis. It was worth the stress and inconvenience as it has made our lives easier with a new kitchen and bathroom, flooring, carpets and a lighter coloured interior. The pull out pantry and large drawers are great. We have a beautiful garden and a gorgeous 14 year old dog called Shinji. We both love our home and where we live and plan on staying there for as long as possible.
We discovered over time that my bad humour was related to feelings of vulnerability, grief and fear of the unknown. When I was being fractious Anne had to learn not to react. We both had to learn to accept our limitations and not have unreasonable expectations of ourselves or each other. We had to face the grief, and terrible sense of loss that comes before acceptance. The necessary internal shifts brought with them a serenity and even deeper love. We gradually became more relaxed, contented and good humoured.
There's no short-cut to fully accepting such a changed life circumstance, and we didn't handle things as well in the first couple of years as we do now. But with good communication, tinkering with medication, and the support of significant others, we gradually learned to accept then embrace our new reality and the subtle changes as they happen.
A Taste of An Anne Day: written in 2011/12 ANNE
I can't find Edie's purse and phone; we've attached them with a small chain so they can't get separated when lost. I spend countless time looking for misplaced or lost items. Rings and keys constantly go missing as well. I've replaced at least 25 house keys as well as multiple credit cards and mobile phones. Sometimes I look for an hour without success, then later that day or the next I notice Edie with the missing object. She doesn't remember it being lost so can't tell me when it's found.
Edie locked me out when I went to hang out the washing. I've been locked out many times when I've been working in the garden. She forgets where I am. On the other hand the front and back doors don't get locked when she leaves the house.
I was packing for an overnight stay. Edie put some toiletries in the bag and I took them out. I said I'd already packed toiletries. Later I found she had put them back in again. On a good day you laugh, on a bad day you don't.
Today I have a deep, aching, searing, loneliness for the lost Edie. The logical, practical mind that remembered everything, always. She knew what to do, how to do it and she always did it well. Edie was my rock.
We're in bed and playing with our iPads. I turn to Edie to tell her I'm ready for sleep. She gets out of bed and puts on the main light to organise her CPAP machine. I ask her to turn on her bedside light instead of the main light, just as she always does, she gets angry and goes to the second bedroom. In the early days Edie would get into a bad mood and stomp into the other bedroom to sleep without me knowing why. The next morning she'd forget she'd been upset and tell me she moved beds because she was tossing and turning and didn't want to disturb my sleep.
I woke up with a nasty headache. I call Edie 8 times before she gets up. We have to leave for an appointment in 15 minutes. She's still in her PJ's and playing games on the iPad. I jig her along in a good natured way. It works. Getting frustrated and impatient doesn't.
“What day is it today?” Edie asks for the fifth time and it's not midday.
I can't open the freezer because Edie put a loaf of bread in the icebox and it's stuck and I just found the ice cream in the cupboard. It takes so much time to do or undo or redo things each day. Edie has accidentally broken a treasured crystal glass I'd given to my mother 45 years ago and a short time later she broke a favourite tea cup. I'm more detached from material items, there's no point in prolonging discomfort for no benefit to either of us.
I can't find the utensils I need to cook tea. I put them in particular places in drawers and cupboards and they disappear. Sometimes never to be seen again. I know I put the small sharp knife in the top drawer, but it's not there. In fact it's not in any drawer and this is a replacement for the previous one which went missing in the same way.
We had a lovely day, and dinner. We were sitting together watching TV. I'm privately reminiscing “This is just like old times”. Edie's mood becomes sombre. I ask her what's wrong. “I didn't like what you just said to me” she responded. I hadn't said a word, just feeling a quiet contentment. I realised later that a very unpleasant memory returned of me being angry and expressing my frustration. Before diagnosis, I'd get exasperated and say, “Jesus, Edie”. Historical emotional memories would emerge as if it had just happened. Edie quietly disappears and goes to bed. Dementia can be an assault on both of us.
Before and for two years after diagnosis, there were many times I'd feel threadbare. I rarely if ever feel that way now. Personal growth comes with time and experience, and from facing your own humanness and limitations each and every day. Caring humbles and softens, and smoothes out the rough edges. It gets easier.
A Taste of An Edie Day:
We have put together a series of slides with captions which will give you some sense of a typical Saturday for me at home.
The Last Two & A Half Years:
Some Concerns about Respite and Residential Care:
I'd first like to make a couple of comments about respite and residential care.
Appropriate planned respite is very difficult to get, and virtually impossible in a crisis. For a few years we were able to arrange planned respite in a local Aged Care facility, one that Edie enjoyed. The respite was organised 12 months in advance, for 1-2 weeks every 3 months and the arrangement benefitted both of us. Unfortunately this facility has discontinued respite. We think we've found a good alternative aged care facility but it will only offer respite this year. Good respite is a necessary part of our plan to stay together for as long as possible.
We would like any facility Edie is involved with to be a homely environment, one that recognises we have spent most of our adult lives together, is respectful of our relationship, offers an appropriate quality of care with an informed approach to YOD, is person centred and provides a stimulating environment.
It was towards the end of 2012 that calm descended on our household and remains so. An addition to Edie's medication regime to counter anxiety issues at night may be part of the explanation. The decision for me to retire was definitely a factor. Although I had not taken on new work and had gradually reduced my hours for the three previous years, our lives are much simpler since I actually retired in June last year. We had worked our way to a good place.
We feel comfortable with other's who know, understand and accept Younger Onset Dementia; those who are in the same position as ourselves, special family members and friends who have stayed closely connected as well as the respectful professionals who assist us along the way. We need and appreciate this help, support and encouragement. We need to know someone will be with us when they're most needed.
We still check in with our neuropsychiatrist from time to time as well and have occasional visits to the Social Worker. We have a Consumer Directed Package which we use for gardening help. Julie who worked with Edie for fours hours a week for 3 years, retired last November and gave her a farewell poem called “Precious time with Edie”; it is working out well with the new worker, Maree. Edie is still involved with the YOD programme at Eyres House two days a week. We continue our regular medical, physio and hydrotherapy appointments. I also do Yoga and have monthly massages. We are fortunate to have extensive resources, support and commitment to Younger Onset Dementia in Ballarat.
Some Brief LGBTI Comments:
Many people in the LGBTI community have had discriminatory experiences throughout their lives; others try hard to blend in so as not to experience rejection and discrimination. We count ourselves fortunate having not just avoided obvious inequities since Edie's diagnosis but felt genuine respectfulness and acceptance from those who cross our paths. I did wonder at the time though whether hospital staff at the rehabilitation hospital who discharged Edie without any consultation with me would have been more consultative and patient care centred if one of us was male. In many same sex relationships, especially those without children, partner's and close friends can take on an even greater significance to the person with dementia. In some circumstances, family are unable to accommodate the lifestyle of their LGBTI relative and try to override the wishes of the partner or the person with dementia. For some a suspiciousness of medical and community care resources exist because of earlier bad experience. We participated in a study conducted by Dr Catherine Barrett and colleagues at La Trobe University. The project is a collaboration with Alzheimer’s Australia. The purpose of the study was to document LGBTI people’s experiences of dementia and their needs to inform the education of service providers. We understand there are few studies internationally that have sought the perspectives of LGBTI people themselves – and until this occurs it difficult to understand how services could be consumer focused. The results will be published later this year and would be well worth examining.
In Summary: Triumph, acceptance and love
Dementia is disabling, challenging and life changing, but there is more to the story than that. I choose not to allow dementia to dictate my thoughts and feelings. I prefer to think about my capacities rather than what I've lost. I have this moment in time and that's enough. Dementia has also strengthened our relationship, brought us even closer and given us opportunities and experiences we otherwise wouldn't have had.
The last two and a half years have seen each of us grow to a place of acceptance, contentment and peace. It's not devoid of frustration and stress but those feelings pass quickly because that's not what we want our lives to be. We choose to be on the side of life.
We are grateful for what we have and it helps us deal with our reality. I have never loved Anne more, nor have I ever felt as loved by her. I know she is here for me and I know that makes me feel safe. We do feel blessed. We'd like to finish our presentation by sharing something of our 31 years together.
Authors: Edie Mayhew and Anne Tudor Copyright 2015
Editor: Kate Swaffer